#51: What is the Parkinson's Progression Marker Initiative (PPMI) and what are we learning?

[@cherylginsburg-smith3375]

I’ve had the pleasure of being part of the ppmi program, from the beginning… I met so many awesome doctors and nurses I have learned a lot It is fabulous that they have expanded the program to include those who do not have Parkinson’s and family members

[@thesecretlifeofparkinsons]

Hopefully you saw that your efforts helped the PPMI study find a biomarker!

[@cherylginsburg-smith3375]

@@thesecretlifeofparkinsons I did see the news… beyond excited to be a part of that… And continue to be Thank you, stay well… PS: my DBS evaluation is in August, at UF health, Florida Gainesville… Fingers crossed!

[@bmbc112s]

Hi, Still following your series from down here in Jupiter Florida. Shared your outstanding work with the 30 other members of our our K.O.P.D. on line exercise group similar to Rock Steady. Keep up your appreciated efforts!!l

[@thesecretlifeofparkinsons]

That's awesome! Thanks, Charlie!

[@newworld6474]

Well done show ... my grandfather had Parkinson's ... then later when I moved to China my father in law who lived with us got Parkinson's, then I came down with Parkinson's and was diagnosed in 2019 ... so I early retired and keep busy taking care of my daughter who is going to secondary school in the Fall ... we are back in Canada not too far from Ohio .... for my daughter's schooling ... my wife is visiting overseas this month etc etc etc again a very good program - Michael J Fox is pretty good too ... keep up the good work as long as it is practical - God Bless, Canada

[@thesecretlifeofparkinsons]

Thanks!

[@jendaley9178]

Interestingly, I participated in the clinical piece of the PPMI study. One of the criteria to participate is a DaTscan. I was called just this week to be told that I had a normal DaTscan, and therefore I could not be considered for the PPMI study! I had 3 MDS confirm my diagnosis prior to joining a 6-month exercise study, based on their clinical assessments. I have continued exercising after the end of the study, and although I still am considered to have PD, exercise is truly the key in the finding on my DaTscan. I was diagnosed in September 2021, my symptoms are very mild, and I continue to remain off PD meds.

[@thesecretlifeofparkinsons]

I wonder with the Biomarker they just found through the PPMI study, that they might have you take that test. They have to get spinal fluid so I don't know if they or you will want to do that. But it may be an option.

[@Shave_n_Butcher]

Hi Jessica. It’s not related to this video really, but this week in Sweden (where I am from), a clinical started where 8 PD patients will get stem cells programmed to turn into dopamine producing nerve cells injected into their brains. Exciting times. Just wanted to mention that. Love the channel!

[@thesecretlifeofparkinsons]

Interesting that you brought that up. A women in my YOPD network was part of a clinical trial in the U.S. and I believe it was for stem cell therapy. I should have her come on and talk about the experience!

[@Shave_n_Butcher]

@@thesecretlifeofparkinsons Now that would be interesting. I have a friend in Japan who works for a company that does something similar. The trial over here is focused on (1) checking if people tolerate the treatment, and (2) checking if it does any good. Quite frightening and thank god there are people who are ready to try it.

[@pattirossiter1065]

Very interesting. Thank you. 🌺

[@MaryAylmer]

I would like to know 😢ii

[@marilyntugade6566]

😮